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This blog post is written by Peter Bell, executive vice president for programs and services for Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his family reside in New Jersey, his oldest son Tyler has autism.

Matthew P. Sapolin

My heart is heavy today. A few hours ago, I learned that one of my favorite disability advocates passed away on Tuesday. His name was Matthew P. Sapolin and he was the commissioner of the Mayor’s Office for People With Disabilities in New York City. He lost his fight against cancer, a disease he had been battling most of his life. He was only 41. But cancer wasn’t his disability. He was also blind. According to his friends and colleagues, his blindness informed his life, it did not narrow it. As a dad of a young man with autism, I like that description. The New York Times published a wonderful article about Matthew’s life, his accomplishments and the mark he left on the disability community. I would like to dedicate this tribute to the mark he left on me.

I first met Matthew at a disabilities housing conference in 2010 at the Federal Reserve in Washington, DC. We sat next to each other and although we didn’t talk much, I was impressed with his ability to navigate all aspects of his life. I did get to know his service dog quite well. He was kind and gentle just like his owner.

In April of that year, Commissioner Sapolin hosted a special ceremony at City Hall to commemorate Autism Awareness Month. He personally attended the event, which honored several advocates from the autism community, and spent considerable time talking with the attendees. He also delivered a speech that made it clear he understood the many challenges people with autism face. His compassion for others was palpable.

Two months later, I joined Autism Speaks co-founder Suzanne Wright for a meeting at City Hall where we talked with the Commissioner about our awareness initiatives and family services programs designed to help people with autism in New York City and beyond. He listened, gave us advice, showed that he cared and importantly offered to help. Exactly the kind of meeting one would like to have with every administrative official!

My fondest memory of Matthew, however, was spending time with him on the South Lawn of the White House in July, 2010. We were there to commemorate the 20thanniversary of the American Disabilities Act (ADA). It was a beautiful day, not a cloud in the sky. Temperatures hovered close to 100 degrees, most of us were sweating profusely. We talked about how fitting it was for the occasion. When it came time for President Obama to walk a line to shake hands with the attendees, it was obvious that only a few would be able to personally greet the President. Suddenly, we were in a “disability mosh pit” vying for our moment of fame.

Matthew’s beautiful wife Candra was at his side but they got separated as the President made his way to our section of the line. I was in the front row and about 30 seconds from my chance to meet the President of the United States. But suddenly I decided that it was more important for Matthew to meet the President than me. That day was about him more than it was about me (or my son with a disability who couldn’t be there). So I turned around, gently grabbed Matthew by the shoulders and guided him to the front of the line where he got his 15 seconds to personally talk with President Obama. I wish I knew what they said to each other.

As soon as they were finished, Matthew swung around and had the most incredible look of joy on his face. I can still see that expression now, it will never leave my memory. He didn’t know where I was standing; he shouted my name and when I told him where I was, he gave me a big ol’ hug. Candra handed me a camera (or maybe it was a phone) and asked me to take a picture of them. Shortly thereafter, I managed to get my Blackberry to snap a picture of the President (see attached) as he made his way down the line. It was a surreal moment for all of us and one that will probably last with me forever. And Matthew Sapolin was a part of it.

I haven’t seen or talked with Commissioner Sapolin since. I didn’t know that his cancer had returned. I knew Autism Speaks was working with his office on some autism awareness initiatives but his death came as a complete surprise to all of us. His passing is a huge loss to our community. Not just to Autism Speaks, or the autism and disability community but our community at large. He represented all of us. He showed us how to live courageously as well as compassionately. He stood for those who can’t always stand for themselves. I learned valuable lessons from him and hope to carry these forward as an advocate for the disabled. Thank you for modeling these qualities for us. Rest in peace, Matthew.

While reading my morning newspaper a few days ago, I saw a large picture of a woman crying and the headline accompanying it told the story that her 27-year-old nephew had been shot and killed by police. He was unarmed. At first I succumbed to a negative stereotype because the person involved was a minority and we unfortunately read these stories way too often. Then I saw the neighborhood where it happened and wasn’t completely surprised. I’m a native of Los Angeles and know it’s not the best part of town, but not the worst.

Only upon reading further – about ¾ through the story – did I notice the statement that the man had autism and learning disabilities. My heart instantly sank. I felt horrible about my preconceived thoughts, and now worse because of the added circumstance. Reading the subsequent details doesn’t offer much else. The officers say they heard a noise and the victim was acting suspiciously. He quickly approached them and they claim he appeared to “pull something from his waistband,” according to a spokesperson for the police department.

This occurred just past midnight so it was dark. I don’t think we’ll ever know the real facts. Is it fair to second-guess the officers who had to make a decision in one instant? But let’s pause for a moment and think – if the officers knew just a little bit more about autism, it’s possible the outcome may have been different.

Autism Speaks developed the Autism Safety Project specifically for this purpose. It provides First Responders with information and guidelines for communicating with individuals with autism spectrum disorder in emergency situations. In addition, the Los Angeles Chapter of the Autism Society of America has developed a training program especially for the Los Angeles Police Department and implemented it over the last year, going around to their various stations to teach officers how to recognize autism.

I have a 17-year-old son with autism. He is high functioning, somewhat independent, and likes walking around town. But that doesn’t shield him from the possibility of something going wrong in a moment. I shudder to think that he could have ended being the name in the paper.

The resources are there – but they need to be implemented to be effective. We can only hope that increased training, awareness and knowledge of police, firefighters and all emergency personnel prevent such a tragedy from occurring again.